Paralyzed since I was 18 years old, I have spent much of the last 30 years thinking about the reasons why the social life of crippled people is so different from those who ambulate on two feet. After reading about the so called Ashley Treatment I decided it was time to write a book about my life as a crippled man. My book, Bad Cripple: A Protest from an Invisible Man, will be published by Counter Punch. I hope my book will completed soon.

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Thursday, December 1, 2011

I find technology magazines and technology geeks to be devoid of any social awareness. I thus avoid such publications with one exception--i like to read about how technology people envision the future. Such predictions are almost always wrong--spectacularly wrong. Think the Jetsons wrong. My son sent me a link to a typical envisioning the future article. I was not enthused but he always has a good reason for sending an article to me. I am interested in not only the content of any link he sends but wonder what inspired him to send it in the first place. As a parent I am interested in knowing how his mind is working as a college student. As lunch time approached today I printed out the link, "23 Incredible New Technologies You'll See by 2021". Imagine my chagrin to read that paralyzed people will be walking by 2012--well sort of walking. This claim is grossly wrong but that is not the point. I now get why there is no chance my favorite invention to make fun of, the exoskeleton, will not go away.

Under the heading The Paralyzed Will Walk there is the proverbial but. The paralyzed will be walking but "not in the way that you'd imagine. Using a machine-brain interface, researchers are making it possible for otherwise paralyzed humans to control neuroprostheses--essentially mechanical limbs that that responds to human thought--allowing them to walk and regain bodily control". A photograph is even included of a man, muscular arms crossed with a skull cap on and hundreds of wires running down his back. Looks to me like dread locks gone wrong! It also sounds a lot like a high end exoskeleton. Deep pockets have been invested in the exoskeleton. What I call the cure industry has embraced this costly idea that has dubious value at best. It made me think how lucky I was to be paralyzed 33 years ago. Modern rehabilitation was being formulated in the 1970s and 1980s and patient care came first. Today things are radically different. Present day rehabilitation is both terrible and wonderful. The truly terrible part is the cure industry that sells false hope and preys upon the newly paralyzed who are fixated on walking. Don't get me wrong, cure for paralysis is a worthy goal as we humans were designed to be bipedal. However a modest bit of research shows we are a very long way from anything that resembles a cure for paralysis. For a practical person such as myself, that means moving on with life using a wonderful alternate means of locomotion--the wheelchair. A spectacular invention that empowers millions of people. In part this is why I hate the idea of the exoskeleton: it glorifies walking as the one and only means of locomotion. This sends a bad message to paralyzed people. Essentially walking is good, wheelchairs are bad. Let's look at it this way and see the folly. Imagine are a paraplegic such as myself. I have the following choice. To start my day I can transfer from bed to wheelchair and go. Time involved less than 30 seconds. Alternatively I can put on a skull cap with dozens of wires and then strap over half my body into "neuroprotheses". Call me crazy but this does not sound like it is an efficient use of time or movement. And here is where culture rears its head. We Americans value technology--the more complex and involved the better. Thus we will dump hundreds of millions of dollars into the exoskeleton but categorically refuse to provide the most basic support services for people with a disability to lead an ordinary life. This makes no sense and many paralyzed people suffer as a result. Needless social isolation and rampant unemployment is the norm. How I wonder can this be tolerated?

I would like to identify something positive about the development of the exoskeleton but have utterly failed. However, there is no doubt in my mind researchers will continue to spend vast amounts of money into the development of the exoskeleton. The reason for this was made clear in the article. Apparently "the same systems are also being developed for the military, which one can only assume means this project won't flounder due to a lack of funding". Great, just great. The real market for the exoskeleton is not paralyzed people but rather its military development. I guess we need the exoskeleton so military men and women can carry hundreds of pounds of gear. Given how insidious the military industrial complex has been weaved into the fabric of American society since World War II the exoskeleton will continue to be well funded. A cash cow even. At the same time states nation wide will cut services for people with a disability with popular legislative support. What a world.

Monday, November 28, 2011

I do not trust groups such as Compassion and Choices who vigorously lobby for assisted suicide legislation. There is no question Compassion and Choices has deep pockets, is media savvy, and an effective lobby. The message is simple--they do not want people to die in pain and great suffering. It is hard to argue this point. Too many Americans die badly. However, I contend we do not need assisted suicide legislation but rather a vibrant hospice movement. While we have many fine hospices, Americans believe hospice care is tantamount to giving up. The result is people die badly and enter hospice care far too late. This only fuels the simplistic message Compassion and Choices advocates--even with hospice care we die badly. We must do better! In my estimation this line of thought is not only misleading but dangerous. Why do I feel this way?

First, all those that advocate for assisted suicide legislation are asking the wrong question. At issue is not how we die but rather how we live. I would posit we should seek to empower those who are at risk populations--the elderly, disabled, and terminally ill. How can we insure families with an elderly parent that has dementia receive adequate support? How can we insure families do not incur great debt caring for a loved one that is terminally ill? What can we learn from people that are near the end of their life? I may appear naive in posing these questions but I am not. I went through the medical mill as a child and recently as an adult. There is no doubt in my mind that to date we Americans have consistently refused to engage in a serious discussion about end of life issues. This refusal has hurt far too many people and spawned zealots such as the deceased Jack Kevorkian, a deeply polarizing figure. Nuanced debate is totally absent. We have two sides, those for and those against assisted suicide. If I have learned anything in life, it is that we do not often get to choose the way we die. When we let others make this decision for us we have entered into dangerous territory. Any discussion of quality of life is subjective in the extreme. Long ago when I was paralyzed my level of injury was considered very high (T-3). Paraplegics such as myself abounded but I met virtually no quadriplegics. One night I asked why there were so few quadriplegics. I was told think about it. I did and remained puzzled. High level injuries, above C-8, were not often treated. The reasoning was simple--life as a quadriplegic was not worth living. Fast forward to the present--all high level spinal cord injuries are treated. The decision making has far less to do with medical facts but American cultural perceptions. This was true in 1978 and it remains true in 20011. The presence of a disability is stigmatizing. For some it is a fate worse than death.

Second, assisted suicide advocates are never satisfied. They use the terminally ill to demonstrate their compassion but are perpetually pushing for wider use. Writing about assisted suicide in the state of Washington in the Olympian on November 16, Brian Faller argued it was time to think about expanding the legislation. He wrote "to improve the chances of passage, the Death with Dignity Act was written to apply only to the choices of the terminally ill who are competent at the time of their death.This raises the question whether, if the act continues to work as intended, we should extend the choice of voluntary euthanasia to: • Persons who are not terminally ill but suffering a severely debilitating medical condition they judge to be unbearable. • Persons who are not competent at the time of their death but who previously made a competent choice of euthanasia as evidenced through a special type of advance directive." If we expand legislation as suggested by Faller I would be eligible to take advantage of assisted suicide. This scare me to the very core. It truly inspires fear. Even this is not as disturbing as what is going on in the Netherlands where assisted suicide has been legal for a decade. Euthanasia advocates are lobbying for mobile euthanasia teams who will "teat" the elderly and disable in their own homes. The Dutch Medical Association has approved euthanasia for people with dementia. This is particularly worrisome because in the near future it will be possible to test people for Alzheimer's disease before symptoms develop. That is people who are clear and lucid will be told they are going to develop dementia. What is the point of such a test when no cure exists? Researchers and clinicians say such testing will help families prepare for the future. Will that future include assisted suicide? Undoubtedly.

Further examples abound but suffice it to say once legalized assisted suicide will be used in greater and greater numbers. This is the case in Washington and Oregon as well as the Netherlands. So don't be fooled by the seductive and sentimental tactics espoused by advocates for assisted suicide. I saw this first hand at the Dr. Oz Show. It was shockingly effective, chilling really how he whipped the audience up into a frenzy of approval. I implore readers to think rationally about assisted suicide. It is in your best interests as well as mine.